Advance care planning in perinatal settings: national survey of implementation using Normalisation Process Theory.

BACKGROUND: Perinatal advance care planning (PnACP) is a process of formal decision-making to help families plan for their baby's care when recognised that they may have a life-limiting condition. While PnACP is recommended in policy, there is a lack of evidence to support implementation and development in the perinatal setting. OBJECTIVE: To conduct an online survey of UK and Ireland perinatal providers to examine how PnACP is operationalised in current practice. METHODS: A secure online questionnaire was developed to collect data on (1) 'what' is being implemented, (2) the 'processes' being used, (3) perceived impact and (4) unmet support needs. Data were analysed using basic descriptive statistics, thematic analysis and through a conceptual lens of Normalisation Process Theory. RESULTS: Questionnaires were completed by 108 health professionals working in 108 maternity and neonatal services, representing 90 organisations across the UK and Ireland. This revealed many resources and examples of good practice to support PnACP. However, there was wide variation in how PnACP was conceptualised and implemented. Existing frameworks, pathways and planning tools are not routinely embedded into care, and respondents identified many barriers that negatively impact the quality of care. They called for better integration of palliative care principles into acute settings and more investment in staff training to support families at existentially difficult times. CONCLUSIONS: Priorities for additional perinatal service development include greater sharing of best practice and effective strategies to target the unique challenges of PnACP, such as time-sensitive collaborative working and decision-making in the face of high uncertainty.

Neonatal nursing during the COVID-19 global pandemic: A thematic analysis of personal reflections.

BACKGROUND: The COVID-19 pandemic has resulted in significant changes and restrictions to neonatal care. The aim of this study was to explore the impact of these changes on neonatal nurses globally. METHODS: We conducted a thematic analysis on written reflections by neonatal nurses worldwide, exploring their experiences of COVID-19. Twenty-two reflections were analysed from eleven countries. RESULTS: Thematic analysis revealed 4 main themes relating to the nurses' role: 1) protector 2) challenges to human quality of care 3) vulnerability and 4) resilience. The measures taken as protector were described as compromising the human qualities of care fundamental to their role. This tension, together with other new challenges, heightened feelings of vulnerability. Concurrently, nurses identified role resilience, including resourcefulness and peer support, which allowed them to navigate the global pandemic. CONCLUSION: By identifying global challenges and strategies to overcome these, neonatal nurses may be better equipped as the pandemic continues. The reflections underscore the importance of family integrated care and the tension created when it is compromised.

Pharmacogenomic biomarkers do not predict response to drotrecogin alfa in patients with severe sepsis.

PURPOSE: To explore potential design for pharmacogenomics trials in sepsis, we investigate the interaction between pharmacogenomic biomarkers and response to drotrecogin alfa (activated) (DrotAA). This trial was designed to validate whether previously identified improved response polymorphisms (IRPs A and B) were associated with an improved response to DrotAA in severe sepsis. METHODS: Patients with severe sepsis at high risk of death, who received DrotAA or not, with DNA available were included and matched to controls adjusting for age, APACHE II or SAPS II, organ dysfunction, ventilation, medical/surgical status, infection site, and propensity score (probability that a patient would have received DrotAA given their baseline characteristics). Independent genotyping and two-phase data transfer mitigated bias. The primary analysis compared the effect of DrotAA in IRP+ and IRP- groups on in-hospital 28-day mortality. Secondary endpoints included time to death in hospital; intensive care unit (ICU)-, hospital-, and ventilator-free days; and overall DrotAA treatment effect on mortality. RESULTS: Six hundred and ninety-two patients treated with DrotAA were successfully matched to 1935 patients not treated with DrotAA. Genotyping was successful for 639 (DrotAA) and 1684 (nonDrotAA) matched patients. The primary hypothesis of a genotype-by-treatment interaction (assessed by conditional logistic regression analysis) was not significant (P = 0.30 IRP A; P = 0.78 IRP B), and there was no significant genotype by treatment interaction for any secondary endpoint. CONCLUSIONS: Neither IRP A nor IRP B predicted differential response to DrotAA on in-hospital 28-day mortality. ClinicalTrials.gov registration NCT01486524.

Palliative care education in neonatal units: impact on knowledge and attitudes.

OBJECTIVE: To facilitate improved and earlier access to palliative care for babies, a 4-h workshop on the principles, practice and resources in palliative care was delivered in 21 neonatal units across London. This paper assesses the impact of these workshops. DESIGN: As part of mixed methods, processual evaluation of a series of education workshops, a pre and post survey instrument was developed, consisting of open and closed questions assessing knowledge of services and attitudes towards palliative care. Before and after each workshop attendees were invited to complete the survey. SETTING: Neonatal units in hospitals across London, including examples of intensive care, high dependency and special care units. RESULTS: 331 healthcare professionals attended the sessions, and 264 (80%) completed questionnaires. The majority of attendees were experienced neonatal nurses working in neonatal intensive care  (61% more than 7 years) but with limited experience of palliative care services. Over 79% of respondents reported that the workshop completely met their learning needs. Post-session 80% of respondents felt confident referring to palliative care services, compared with 46% before (p<0.001). Analysis of open and closed text responses revealed a shift in attitude after the sessions from a focus on dying/end-of-life, towards integrating palliative care as part of a holistic treatment plan. CONCLUSIONS: A short (half day), locally delivered workshop can change attitudes and increase knowledge in neonatal staff. Such a workshop can serve as a first step in facilitating access to and utilisation of a variety of palliative care services.

Training neonatal staff for the future in neonatal palliative care.

Neonatal palliative care is an emerging specialty, developing in the context of the significant prevalence of life-limiting and life-threatening conditions amongst the population treated and cared for by neonatologists and neonatal nurses. In this paper we explore the need and provision for training among practitioners in neonatal palliative care to date. We describe several different educational and training programme models with attention to structure, content and impact on participants' knowledge, capacity, competency and confidence in delivering palliative care services suggesting what is needed to ensure the highest standards of care for newborns and babies with life-limiting illness and life-threatening conditions.

Can we truly offer a choice of place of death in neonatal palliative care?

In the developed world, more than 90% of neonatal deaths occur in hospital and most deaths on the neonatal unit follow the planned withdrawal of ventilation. In this paper we look at what choices of place of death can be considered, the support that is available outside the hospital environment and the practicalities of achieving parental choice. We conclude that choices of place of death are usually possible, although there may be practical or resource restraints that affect which choices are available or can be achieved. Where choice is currently offered, the proportion of hospital deaths is much lower than national statistics suggest. Sadly, it is likely that the high proportion of hospital deaths currently reported reflects not that choice is unavailable, but that choice is not offered.

Design, conduct, and analysis of a multicenter, pharmacogenomic, biomarker study in matched patients with severe sepsis treated with or without drotrecogin Alfa (activated).

BACKGROUND: A genomic biomarker identifying patients likely to benefit from drotrecogin alfa (activated) (DAA) may be clinically useful as a companion diagnostic. This trial was designed to validate biomarkers (improved response polymorphisms (IRPs)). Each IRP (A and B) contains two single nucleotide polymorphisms that were associated with a differential DAA treatment effect. METHODS: DAA is typically given to younger patients with greater disease severity; therefore, a well-matched control group is critical to this multicenter, retrospective, controlled, outcome-blinded, genotype-blinded trial. Within each center, DAA-treated patients will be matched to controls treated within 24 months of each other taking into account age, APACHE II, cardiovascular, respiratory, renal, and hematologic dysfunction, mechanical ventilation status, medical/surgical status, and infection site. A propensity score will estimate the probability that a patient would have received DAA given their baseline characteristics. Two-phase data transfer will ensure unbiased selection of matched controls. The first transfer will be for eligibility and matching data and the second transfer for outcomes and genotypic data. The primary analysis will compare the effect of DAA in IRP + and IRP - groups on in-hospital mortality through day 28. DISCUSSION: A design-based approach matching DAA-free to DAA-treated patients in a multicenter study of patients who have severe sepsis and high risk of death will directly compare control to DAA-treated groups for mortality by genotype. Results, which should be available in 2012, may help to identify the group of patients who would benefit from DAA and may provide a model for future investigation of sepsis therapies.

Perinatal network consensus guidelines on the resuscitation of extremely preterm infants born at <27 weeks' gestation.

In spite of recent advances in perinatal care and an increase in survival of extremely preterm infants over the last few years, there remains a lack of consensus about practical aspects of resuscitation of extremely preterm infants born before 27 weeks' gestation. With this in the background, the working group of one of the Perinatal Networks in London, UK, set out to conduct a survey to explore the opinions of the doctors and nurses on resuscitation practices of infants born before 27 weeks' gestation, with the aim of developing consensus guidelines. The working group emailed a questionnaire to all neonatal units within the Perinatal Network to seek the views of paediatric medical and nursing staff on resuscitation of infants born at <27 weeks' gestation. The questionnaire was returned anonymously by post. The responses highlighted the difference of opinion that currently exists amongst the clinicians and nurses across the world around the resuscitation practices of extremely preterm infants; yet at the same time, there seemed to be some consensus on certain issues. Based on the survey (questionnaire) results and already existing literature, the working group of the North West London Perinatal Network (NWLPN) produced and implemented specific consensus guidelines on practical aspects of resuscitation for infants born before 27 weeks' gestation for the network. The network plans to audit these guidelines in future and also produce a parent information leaflet explaining the relevance of these guidelines.